Saturday, April 5, 2014

A few weeks ago Samantha and I went to Lucille Packard for her annual endocrine checkup. We already knew her levels were off--TSH was too high. Instead of working out medicine changes ahead of time, we thought we'd wait until we got there to talk it over with her doctor. She's a year or so from puberty so things could begin to change a lot. Knowing her history that is a worrisome prospect for us.

Our visit, however, didn't go as planned. We met a new doctor (which could have been my fault if I didn't specify when I called). He was unfamiliar to us, but marched in with her blood results. He listened to my concerns but dismissed every one. He didn't believe me when I said she wasn't normal (TSH resistant). He simply said that the labs were wrong and that he wouldn't change her dose. He knew nothing of her, her thyroid history, her medical history, none of it.

Samantha didn't say a whole lot. She was probably sensing my disbelief. I was so dumbfounded that I didn't speak up, which was the worst thing I could have done. He examined her said "Thanks for coming" and just walked out the door, addressing none of my concerns.

We left and I didn't know whether to be angry or cry.

When Samantha's levels are off it takes very little time before she becomes ill and she spirals out of control. Our regular endocrinologist would have never dismissed us and Samantha loves/trusts her.

So I called our pediatrician and got us in the next day. I explained what happened at LPCH and he was dumbfounded. I told him that I needed him to help me. We both know my child well and he knows that she can't go without a dose change if she's off. For crying out loud she went from normal to a TSH of 33 in two months when she was younger. It was serious and scary.

The pediatrician asked Samantha how she'd been feeling. She opened up to him and said that she's been sad and very angry. Even she knows what her body feels! My poor girl.

Our pediatrician agreed that it was dangerous to wait and so he changed her meds slightly. We started that day, tested this week, and guess what?! Samantha is now "normal."

Folks, fight for your child and don't let the doctor walk out the door like I did. Demand they address your concerns and make them read the damn chart. Samantha has been a patient there for 8.5 years. There is a decent-sized file on her!

Friday, April 4, 2014

I was bummed the other day when I discovered that I had slept through a very exciting and loud thunderstorm. I love thunderstorms because they are few and far between here in my part of California. And although we need rain desperately, I think the weather is making me blue.

Worse than winter blues, this weeklong rain has made every morning a drag. I feel unhappy, grumpy, just plain blah. Today the sky was light and I felt happy. Not soon after the rain started again.

I'm looking forward to the sun and the heat that will grace us this weekend. Hopefully it will light a fire under me, take me outside, and fill my backyard with laughter.

Although I have a small window in my home office, I enjoy taking my lunch outside on the patio for a bit of vitamin D. Some days, after work, I steal into the backyard and sit against the back of the house, facing south, and open a book. I long for that warmth on my face as I read and the sounds of neighborhood swirl around me.

Monday, March 24, 2014

Dr. Seuss Party--Alyssa turns 6!

Alyssa has been so enamored by anything and everything Dr. Seuss. We decided to give her a Dr. Seuss themed family part this year. No St. Patty's day fare this year. 

Pinterest had a wealth of ideas to start us out. We made truffle trees out of pool noodles and feather boas. The pool noodles would often fall over, but they were kind of whimsical in that way. I painted them with spray paint. We won't be able to take them into the pool, but we will use them for other things. 

I stumbled on this Etsy shop where one can purchase all the elements for a photo booth. For $3.95, I couldn't pass it up. My mom and I spent an hour or so cutting out Dr. Seuss characters for a silly photo session. We had the Cat in the Hat, the Lorax, Thing 1 and Thing 2, and Ten Apples Up on Top.

My mom frosted the cake per Alyssa's request. I'm not the best cake froster. I need to take a class on cake decorating. It turned out well and Alyssa was happy.

Despite the near 90 degree weather in March, we had a great day with our family. And Alyssa's admission that it was the "best day ever" was enough to make me a very happy momma.

Sunday, March 23, 2014

Alyssa reads

Over summer Alyssa was nervous about entering Kindergarten because she didn't know how to read. I tried unsuccessfully to assure her that she would learn to read in Kinder and no one expected her to read the first day. 

Fast forward to February and the beginning of Dr. Seuss season. She picked up Hop On Pop and realized that she could read it all by herself. Her enthusiasm was contagious and I drove straight to Target after school to the Dr. Seuss book display. She picked up Hop On Pop and opened it up right there and started reading to me. I had to steer her through the aisles while I finished my shopping and she kept on reading. The lady at the check stand kept her page while she scanned the book and Alyssa picked up right where she left off. 

I couldn't stop smiling. There is something beyond magical when a child finally gets it--it's almost like you can see their brains growing those connections. 

Alyssa picked up Green Eggs and Ham one night and read the book to me. She stopped in the middle and said, "I love Dr. Seuss. He helped me learn to read." Indeed he did. 

Saturday, March 22, 2014

6 Weeks Post-Transplant

My mom is doing well. She's able to venture out to the store in off times. We've been taking 2-mile walks daily. She's getting her hair back slowly, too. Pretty soon the maintenance side of this whole transplant will be in place. She'll have to have the Aredia every three months and then Revlimid, maintenance chemotherapy, sometime after that. I can't recall how often she'll need that.

She hasn't had the sickness like she did after last transplant, but there is a certain amount of sensitivity or taste-shock (I'm not sure what to call it) that comes along with it. Taste is very intense post transplant: mints taste really strong, spicy things are magnified, and sweets are beyond intense.

We're planning our annual girl trips: Arizona and Las Vegas already. I was surprised when my mom asked if me and the girls were still planning to go see my Grandparents for Easter break--she wants to come too! I would have taken the 9-hour drive without her, but I would much rather she come. This has been our tradition for at least 4 years now and I can't imagine missing it. While she won't be able to come join us in the water for the daily visit to the swim center, I'm hoping that she'll be ready to jump in and play when we head to Las Vegas this summer.

Thursday, February 20, 2014

My kids and I have been confined to home this week. They brought home some childhood disease and decided to wrap it up for my birthday. Yay! The kids were excited because I had to make a grocery store run yesterday. We made it two blocks before Alyssa started coughing and couldn't breathe. So we turned around and I gathered up the inhalers and administered them. It's that time of year when I have to carry a nebulizer in the car and inhalers in my purse. And here I thought we lucked out this year.

As you might have figured out that means that we can't go anywhere near my mom or dad. She's a bit blah, which is to be expected, but I would love to at least take a walk around the block with her. Not going to happen for a couple of weeks I guess.

For now my girls are playing nicely while I continue to work. It's challenging to have to sick kids home and two-hour conference calls. Boy do I love my mute button. Now that they're older they can handle being alone for two hours; we've raised them well enough that they understand boundaries and how to behave when mom and dad aren't looking.

Tuesday, February 18, 2014

Home again

Thursday of last week my mom came home from UCSF. Her numbers went up exponentially from Wednesday to Thursday (from 10 to 67 on platelet count, for example). She got the OK to come home. She was so excited.

In the hospital, she was expected to get at least a minimum of 1,000 calories a day, which she was barely hitting. At home, however, she's a champ. I bet she's getting 1,000 calories at breakfast. Now that she can control what she eats and eats what she wants, she's doing much better. She's been getting back in the grind slowly, with lots of breaks in between.

My kids decided to go and get sick this week with some respiratory virus and so it will be a while before I get to see her. I'm bummed, but more that my kids are sick with no end in sight.